When I first went to Narcolepsy’ Networks patient conference in 2012, I had never met another narcoleptic. In fact, I in part went to the conference to meet my good internet friend and kindred spirit Heidi Lindborg over at the Zombie Institute.
Firstly, if you have never done so, I would highly recommend meeting another narcoleptic. And, meeting another narcoleptic at the patient conferences every year gives you an opportunity to meet more than one! For me, finally meeting someone that really & truly understood my sleepiness and had adopted some of the same lifestyle accommodations that I had was beyond an emotional experience. It was like meeting a long-lost sibling.
One of the first things I noticed about narcoleptics is that we tend to try and find stimulation wherever we can get it; and we must undergo these measures to simply function (and especially to get up at 7:30 AM for breakfast and seminars).
Sure, we have our prescription pills, coffees, Five Hour Energies, and carb-loaded sugar-drinks to keep us going, but that just doesn’t always cut it. What does seem to cut it are cigarettes. I have never seen more smokers gathered on one place in my life than at the Narcolepsy Network conference. There were Camels, e-cigarettes, nicotine patches and nicotine gum (my personal preferred method).
So what gives? Is it just the fact that it’s a stimulant? Or could it be that nicotine is a “special” stimulant for narcoleptics?
After that first patient conference, I started asking opinions and reading up on what nicotine does to wakefulness, and I was totally stunned. What I found was some scientific literature to support nicotine as an acceptable (and anecdotally preferred) stimulant for narcolepsy.
How might nicotine help us narcos?
1. Getting our *ss up in the morning. Did you know that normal people don’t have to force themselves half-awake, drink coffee, take a Ritalin, go back to sleep and then “wake up for real” half an hour later? No, it’s true. Normal people don’t do that. Sleep inertia is one of the most frustrating parts of narcolepsy for me, and in my opinion greatly contributes to the “lazy” stigma we face. Not only that, but most people aren’t so angry in the morning either.
Anyway, these two doctors in Tennessee had a 17-year-old male narcoleptic patient that they had some trouble treating. Like a lot of other narcoleptics, his morning sleep inertia was so bad that he couldn’t wake up to take his stimulants and go back to sleep to wait for them to kick in (on top of that he was “combative” if you did try to wake him. The solution? Nicotine patch!
The genius plan these two doctors came up with was for Mom & Dad to sneak in this kids bedroom, slap a 14mg nicotine patch on his arm, wait 20 minutes & rip it off.
Just for comparison for the non-smokers out there, one cigarette has about 1-3 mg of inhaled nicotine. So this guy got a mega-dose for never having been a smoker.
Note: he is reported to have successfully graduated highschool and not been kicked out for truancy thanks to the patch.
2. Warding off EDS in general.
In another study, researchers surveyed narcoleptics about nicotine use. In this particular study, apparently all narcoleptics who smoked asserted that smoking reduced EDS, and one woman even claimed that it helped her cataplexy.
I’ve spoken with many narcoleptics who no longer use cigarettes and prefer e-cigarettes (way to go!), and the effect seems largely due to the nicotine as opposed to smoking itself.
Smokers also have impaired glucose and lipid metabolism after eating. Taken one way, this means that smoking is bad for you. Taken another way, it means that smoking may help mitigate some of the postprandial (post-meal time) sleepiness narcoleptics often experience.
4. Attention. Pay attention. FOCUS!
Smoking might also help us pay attention. Nicotine has been demonstrated many times previously to enhance attention and nicotine patches have been used for cognitive deficits in other disorders.
In addition, attention deficits have been demonstrated in narcoleptics and are a common complaint, although everyone used to think it was merely a symptom of the sleepiness.
In a recent paper published in The Journal of Neuroscience, orexin and nicotine were shown to excite the same neurons in the prefrontal cortex. This is important because these projections are necessary for some kinds of attention.
5. Get your [anti] self under control.
Certainly, smoking itself exacerbates inflammation without a doubt, and probably contributes to the progression of some autoimmunities, although may be protective for some others (reviewed here, here, here, and here). Whether the immune suppressive effects of nicotine itself is at play in these cases of supression is not entirely clear.
Smoking has been demonstrated to be associated with decreased IgG levels (mostly IgG2), and nicotine replacement lowers only IgG4. Narcolepsy has also been associated with decreased IgG1-3 levels and increased IgG4 levels. In addition, narcoleptic smokers have even less IgG than normal smokers (although whether they also specifically have lower IgG4 has not been determined).
This is entirely speculative, but if elevated IgG4 is a negative event in narcolepsy, maybe smoking and nicotine replacement therapies effects on IgG4 could bring these levels down to “normal?”
6. Orexin Activation!
Nicotine administration has also been demonstrated to directly activate orexinergic neurons. So, if you have some orexinergic neurons left they are activated (and presumably increase orexin production)… and, there’s nothing more anti-narcoleptic than upping orexinergic neuron activity!
So, should all narcoleptics be smoking? Absolutely, not. But there is some data to suggest that nicotine could have beneficial effects on performance, attention, and wakefulness in narcolepsy, and could provide some clues as to why so many of us are seen lighting up at the conference.